Krysten shared her journey with her child, offering a heartfelt look at the challenges, triumphs, and lessons that come with parenting a child with Prader-Willi Syndrome (PWS).
From the moment Krysten’s child entered her life, she has been continually inspired by their strength and determination. “Every challenge has been met with a ferocity I could have only dreamed of. My child is tough, a fighter, and I know one day they will unequivocally advocate for themselves. They truly have shown me the way.”
The journey with PWS has been full of both trials and triumphs, but Krysten has never felt alone. “Our intensely loving and supportive PWS community has been incredible. Families thrive off hope, love, and the understanding that we can face any challenge together. We are not alone in this complex journey.” She also expresses deep gratitude for the medical providers who are experts in PWS. “Their decades of research and advocacy have created a roadmap for care that benefits our children—and they continue this fight alongside us.”
Parenting a child with a rare disease has revealed strengths Krysten didn’t know she had. “Parenthood can feel impossible at times, and parenting a child with a rare disease can feel even more so. Yet I am continually surprised by my own resilience. I look at my child and see exactly who I want to be—and I know I can be that for them because I see it all in them as well.”
To parents whose child has recently been diagnosed with PWS, Krysten offers encouragement: “There’s no sugar coating how challenging the diagnosis is—it’s life-changing. But know this: Your life will change for the better. Your child will show you and the world who they are so beautifully, and PWS is only a part of that. They will meet and exceed expectations, so continue to believe in them and push them beyond what the world says they are capable of. They will move mountains!”
Krysten finds hope in the power of the PWS community and the ongoing work in research. “For a rare disease I had never heard of before my child’s diagnosis, this small community feels incredibly large. Parents of children with PWS never stop fighting, and the fundraising and awareness efforts are inspiring. I see so much happening in research that directly benefits PWS. The support feels huge! Deep in my heart, I am hopeful because I see our children’s strength every day.”
Looking ahead, she imagines a future with treatments for PWS: “Life will be so different because our loved ones will be free of some of the world’s toughest challenges. To live a life of fullness is something most people take for granted, but it allows everyone to thrive—and that’s what I want for our children.”
Parenting a child with PWS has also taught Krysten invaluable life lessons. “We’ve learned to slow down and savor every moment of beauty in our lives. Life can be taken for granted far too easily. It’s so important to enjoy the journey and care for ourselves while we still can. We are our kids’ greatest examples.”
Reflecting on the quote, “Until you have a kid with special needs, you have no idea of the depth of your strength, tenacity and resourcefulness,” Krysten says, “It’s true. I feel stronger and more confident than I ever thought possible. But I’m no stronger than anyone else—any parent can find that strength because love drives it. Your love will show you just how far you can go.”
And about the quote, “Most people see what is, and never see what can be,” she adds, “For all the medical professionals who tell you your child will only ever be ‘this’ or ‘that,’ just tell them to wait and see. You know what your child can be and do. With the research happening today, it’s possible to dream bigger than ever before.”
Through her story, Krysten shares a message of resilience, hope, and the boundless potential of children with PWS—and of the families who love and advocate for them every day.
